When the mob and the press and the whole world tell you to move, your job is to plant yourself like a tree beside the river of truth, and tell the whole world

"No, you move."

Friday, November 30, 2012

What i faxed to House Committee Hearing on Autism

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Yesterday, I sat in front of my
computer for several hours watching you have a discussion about
people like me. For hours and hours I watched you talk about people
like me as though we cannot hear you calling us an emergency, a
crisis, a burden, a tsunami, hopeless, an unfortunate situation,
poisoned, damaged. Always the horrific language. Always about
children. Always children you claim to love.

All this talk of vaccines, of blame, of
hate. I found myself asking again and again, why do you hate us so
much? And why are we so invisible, that you can't even get past
hating your kids enough to see that they hear you and that they grow
up and that their adult counterparts are listening right now?

And then I heard Eleanor Holmes Norton
speak up.

She asked about adults. She asked what
happens to us if we are not in the system, if we are late diagnosed.
She asked about people like me-autistic adults. People who the rest
of the hearing seemed content to ignore the existence of.

And no one had an answer for
Congresswoman Norton. But I do.

Congresswoman, I was diagnosed as a
small child, but since I learned how to talk as a not much larger
child your colleague Burton probably thinks I don't count. Since I
could make it academically, and the goal of early intervention
programs in those days (and many these days) is “mainstream
kindergarten”, there are a whole lot of issues that were written
off as behavioral, as choice, rather than as neurological.

Things like sensory issues.

Things like sequencing problems.

Things like inconsistent ability to
functionally use language.

Things like not having a single friend
in my grade.

Things like inability to remember and
carry out auditory directions.

Things like an inability to get through
a day in regular ed without melting down because I was so
overwhelmed. Not when I was 5. Not when I was 8. When I was 15.

I am intelligent, I am academically
capable, but there are things that I just. Can. Not. Do. And no
telling me to try harder or just act normal or whatever was going to
do it.

Congresswoman Norton, someone told you
that our families thought we were quirky and took care of us. That
person was incorrect. So incorrect.

By very early adulthood, my mother's
war on autism (only since I can talk, I was “cured”, it was a war
on weirdness, misbehavior, disrespect, what she perceived as willful
faux cluelessness and laziness) had escalated to frank abuse, &
she kicked me out of the house.

It was January. I was a statistic-a
homeless autistic person. One of far, far too many.

I had read on the internet that
services are a thing, that housing for people with disabilities is a
thing, so I went to the local Arc to apply for services or at least
get help applying for services. Do you know what they told me?

They told me that they had to talk to
my parents. I was a legal adult, have never been under guardianship,
and they would not talk to me, but only my parents. The parents who
threw me out of their house after abusing me for years. THOSE
parents. Those were the only people the Arc would interface with.
They had no protocol whatsoever for working with adults with
developmental disabilities who are independent but need a little
help. Their one suggested resource, the local center for independent
living, would not touch me with a 10 foot pole since I have
developmental, not physical, disabilities.

The social safety net for all people is
barely more navigable. It's more navigable in that it didn't require
my mother. It's less navigable in that it required sitting in sensory
hell for 4 hours waiting for them to call my number, every piece of
documentation of income (or lack thereof) known to man, and it
required making phone calls that never got returned on their
schedule.

I would have starved to death
waiting for foodstamps had another autistic person who has better
phone skills than me-which is not difficult, incidentally-not called
the worker who was supposed to call me back several times when they
were not returning my calls.

And, Congresswoman Norton, I was one of
the lucky ones. When I got kicked out, I got into a nice shelter, if
such a thing can be said to exist. I was safer there than I was in my
parents' home. I had someone who would call social service workers
for me. I had a doctor who would fill out paperwork to keep me on
necessary medication even though it is a pain in the ass. I had a
social support structure that a lot of my Autistic peers just don't
HAVE. The parent-centric service model was detrimental to my life,
but it ends the lives of others.

This should not be the good outcome
story here.

I'll tell you what happens to adult
autistics, Congresswoman Norton: we don't fall into the cracks. We
are shoved into the cracks. Those who deny our existence, like your
colleagues, are doing nothing but shoving harder.

27 comments:

I know you are not a fan of mine, but I want you to know that I am listening.

This line at the end, "...we don't fall into the cracks. We are shoved into the cracks. Those who deny our existence, like your colleagues, are doing nothing but shoving harder" is incredibly powerful.

Not all us parents are bad, I hope. But I truly disagree with that stupid statement I often get that "God has a plan." My oldest is now 14. Something has to change as kids become teenagers and then adults. We are all so intent on enabling them by 21 and then dropping them off that cliff. Even the most affected. I hate this committee, because it seems like they are addressing autism as a disease to be cured. Which ignores what we to do with those for whom this is a way of life. It's like development stops as a young adult and voila you have nothing else to face. I am scared for my kids (who range from Aspie to severe autism with bipolar) and for folks like you who don't fit our criteria as neatly and for all those moderate autistics who can't navigate even half as well as you. We are failing them. And failing to tap their value.

Thank you for writing this. I watched some of the hearing, but had to keep turning it off. I just didn't have the stomach for the patronizing language, the focus on tragedy and "burdens" to families, and of course the vaccine stuff.

Well written, and I can feel your story - it could have been me if I had had different parents. But that is where I diverge - they taught me how to tolerate the intolerable, they required me to learn, grow, and develop, they held me accountable, and though I am far from "typical," their effort to force me to overcome my challenges made me an independent and capable person. I do not use my challenges as an excuse, I work to overcome or work-around them; it is not easy, but it CAN be done if you are intellectually facile. These hearings are an effort to STOP the harm from happening to begin with, not to eradicate those struggling as a result of the harm done; these are two different paths that both need to be addressed. I do not hate my daughter with severe Autism; when I adopted her as an infant, I promised I would meet her every need. She works mightily to overcome the hurdles her "Autism" puts in her path to be capable; she has learned what behaviors are OK when alone, but not in public, she has learned to speak in sentences and paragraphs, she has learned the academic skills just like her age-peers, she has learned how to brush her teeth and her hair (despite the sensory challenges), she has learned how to bathe herself and dress herself, she is learning how to be safe away from home, she is learning how to balance a checkbook and shop with a budget, she is learning to read labels and avoid foods that significantly worsen her many conditions (hippocampal sclerosis, frontal/temporal epilepsy, mitochondrial dysfunction, hypotonia, sensory challenges, GI dysfunction, immunity to her own myelin, and more). But for the shots she received as an infant, she would be worried about her latest crush and desperate for two more years to pass so she can get her license. We are trying to make it so many more kids have a chance at a "typical" life, not trying to get rid of the kids who are struggling so mightily! If you take some time to look around, you will find many, many people struggle with their lives; I believe everyone can overcome a lot with the right attitude, assistance, and willpower. I hope we succeed in getting budget properly allocated for ALL people struggling with these issues -- and that you find a compassionate provider to do what your parents failed, to help you help yourself. BTW, I found HUGE sensory help in going gluten-, casein-. soy- and corn-free (both for myself and for my daughter). I wish you success!

Wow. I think that post was almost a bingo, K! You have smart enough to overcome, a comment about 'those shots', a parent telling you how much worse her kid is than you even though half of what she describes is pretty much what you go through, and suggests a fun and practically food free diet. Awesome sauce on bingo!

To Liz. Your post is insulting, ableist, and completely inappropriate on this blog.

PS: if your "severe" daughter can handle self help skills, dressing, bathing, balance a checkbook, read and understand product labels, and more... what does that make us "high functioning" people (cause, ya know, we can type on blogs and Facebook) when we can't accomplish those things, yet we're diminished as "so high functioning" by parents determined to silence us?

PPS: Oh, and your "But for the shots she received as an infant, she would be worried about her latest crush and desperate for two more years to pass so she can get her license." crap?

Yeah. Cause Autistic people never have crushes. Never get married. Never drive. She can't possibly look forward to those things being Autistic 'cause Autistic, right? (end sarcasm. Tried to do it as HTML "joke" tag and it didn't post. Oops.)

Your post is so patently offensive I can't believe you had the gall to post it here. I hope others eviscerate it as well.

Liz, I can't believe some of your statements. One: my son has autism, not a disease. Shots are painful and haven't been proven to be helpful, at all. Two: my son has been to nutritionists and gastro doc, feeding team and everything else under the sun. Unless your child has celiac disease, going gluten free is unnecessary and possibly harmful.

Don't even get me started on vaccines. Autism is a communication disorder NOT the plague. My son isn't broken and he doesn't need to be cured. What he needs is training, support, and understanding. He might possibly need all those things into adulthood. That's ok. There needs to be services for autistic adults, just like there are services for blind adults.

I think this letter is fantastic. And I wish that you could receive the services you need, and that your parents were more supportive.

Many autistics really do have difficulties doing many things including driving, despite wanting to. The ones who can do those things haven't guaranteed those abilities to those who now have difficulty with them.There is nothing that should be considered morally repugnant of "curing" communication impairments. Cure would consist of therapies. Celiac disease isn't necessarily the only condition for which a modified diet would be beneficial. It isn't prudent to automatically condemn any diet that may be helpful for someone, especially without being informed. We shouldn't presume that a few forms of support and training will suffice, while condemning the research into future therapies, by misleading others. What if autistic adults don't want to remain dependent on others? I think it's offensive to assume it's ok. One wouldn't want that assumed for themselves by others.

K, You are talking about hard truths here, truths we all need to hear about autistic lives and how we treat autistic persons. You get backlash for it because it is the hard truth. That people don't want to talk about. That they don't want to think could be them doing it. That is easier to rebut then to admit. ((Thank you.))

I find it ironic that you would pile-on. My Autism is no less and no more than anyone else'. Same for my daughter, who was diagnosed "severely Autistic" at 2. She was never meant to speak with intent or toilet train, but to be institutionalized, per the medical professionals and Schools. The fact she has worked, in therapies, over 18,000 hours in less than 7 years, 1:1, in order to learn those things which some learn without any effort at all, and is succeeding, is belittled by individuals sharing her diagnosis?! Really? One would expect you to maybe be happy she is going to be one less person with autism, living in an institution, non-verbal, being abused by her caretakers...And, regarding my own diagnosis, somehow the pain I endured and the efforts I made to overcome my issues are less than yours, too? I think, as a group, the majority of you need to grow-up and realize the world is a big place, and just because you want to hoard your misery, cuddle it close to your heart, and tell yourself a story that only you and your friends know what "Autism" is, does not make it reality. Too many families work tirelessly, to help give their children a voice and the independent ability to have a choice in what happens to them, why would you deny these children the very same things you desire?!